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This fund is to get Lachlan a special pediatric wheelchair as soon as we can as it will help him to participate in play and learn despite his current physical limitations ♿️❤️
A lot of people have asked how they can help and so we are setting up this fund to allow people to contribute to helping Lachlan. We work very hard to provide what he needs and there are amazing funding options available but they don’t cover everything and there are many expenses. Some of the things we are saving for are: special pediatric wheelchair, a special sitting chair for floor play, accessibility adaptions for our car and home, more extensive genetic testing, occupational therapy, and physical therapy.
Lachlan’s Story: Many of you may be wondering what exactly is Lachlan's story and the truth is we don't really have answers yet so we don't know either but I'd like to share what we do know. Lachlan is exceptionally rare and is undiagnosed. He was monitored very closely throughout pregnancy due to a previous loss we had and everything was textbook perfect. Labour was a long 4 days with him not facing the right way but once he decided it was time it went pretty quick and very smooth and he was born naturally via waterbirth at KGH January 22, 2017. He was healthy and hungry and adorable and we took him home later that day happy as can be though with no idea what we were doing as most new parents are.
At 1 month old there were some concerns with his head growth so we took him to the hospital and had an X-ray done, his head was small and they wanted follow up appointments. We did blood work and tested for all kinds of things and he even had an MRI done. He’s had multiple EEGs, X-rays, bloodwork, exams, and more and more tests. He was cleared for all infectious diseases or known things that could be causing his slow brain growth. The next step was genetics testing for rare diseases or mutations. He's had 3-4 genetics tests and DNA testing done without a conclusive diagnosis and each test takes months to get results from. We are being referred to another genetics test we can do in the States to see if we can confirm a gene or find out something new. Gene discovery is fairly new in the medical world and new genes are being discovered all the time. What we are looking at is he could be the only discovery or there may be only one other recorded case in the world so he is definitely an incredibly rare soul. We are on our own journey and we will make our own path through.
What we do know is that nothing is a given for him and every one of his achievements are something huge to celebrate as they are true miracles. He has been climbing an uphill battle since he was just a few months old with seizures that make it very hard to learn. He has seizure spasms as well as constant underlying seizure acitivity. He is on his fourth med for this and they have improved significantly but are still not under control. Imagine trying to learn a new language or sport and blacking out many times while you try to figure that out. He doesn't give up though and neither will we! Due to this huge challenge and his smaller brain (which means it is more challenging to make connections as he learns), he has other global development delays. His development stayed on track until about 3 months old but has progressed slowly since then. He is working on outgrowing his newborn reflexes still and he has spasticity which causes him to go rigid when he tries to learn to move his body making things like learning how to kick, reach, bend, roll, sit up, and grab things very hard. He is now opening his hands and working on learning how to grasp things and hold on. A lot of it is accidental but that's how babies learn He can sit up for a few seconds before he loses balance and if you start him rolling he finishes it easily on his own. His head control has improved so much and he's working on finding his balance and middle by moving forward and back and doing little baby crunches. Another one of his big challenges is he has cortical vision impairment which causes near blindness. That means that his eyes are perfect but his brain doesn't know what he sees yet. Sort of like how a newborn can't tell what they are seeing yet. He has just started to show that he sees some things now and does track on occasion. That's exciting because not being able to see really challenges his development as well since it's much harder to find your balance, figure out what's up and down, and learn how to speak or eat. Most babies learn to eat by watching their parents intensely. Since Lachlan doesn't have that ability he has oral challenges and is at high risk for aspiration. He's done a swallow study fluoroscopy which is a moving X-ray to see and he does aspirate some of his milk and food. Aspiration can lead to pneumonia and infection and is very dangerous. This has gotten more challenging for him as his airways grow. He ended up with an NG tube and then in the summer of 2018 he had surgery to get a G-tube. He is now entirely tube fed directly into his stomach which is much safer and easier for him and us as well. We are just now getting back into physical therapy and occupational therapy since his recovery from the surgery.
Lachlan is followed very closely by a very large team of doctors and therapists and has so many people in his corner. We are so grateful for all of their help. We have a family doctor, specialist pediatrician, genetic counselor, neurologist, occupational therapist, speech therapist, dietitian, infant development worker, pediatric ophthalmologist, social worker, vision therapist, three physical therapists (one of which is specialized in nervous system work and is in Toronto). Lachlan has 1-3 therapy appointments a week and usually at least 1 doctor appointment a week. We track all of his food intake, his number and type of diapers, his sleep, the number of seizures he has (what we can notice), and when we give him meds. While he’s sleeping we record him to see if he’s being woken up by seizures. We do all this to make sure he is safe, help get more answers, and because the doctors will ask about him and we would never remember if we didn’t record it all! :) We do have help as we have a childcare provider and grandparents in the area as well as flexible schedules for our jobs.
To say this is scary and challenging is an understatement. Nothing could have prepared us for this and we are strong because we have to be, not because we were at all ready for this. We are so incredibly grateful that he is easy going and that we get to see him smile and laugh so we know he is happy. He's such an amazing blessing and fills our lives with light. He has already taught us so much and most of all that life is not guaranteed and is short and unpredictable so we need to make the most of it and truly love what we do and spend time with our loved ones. There is no time to waste on negativity! Lachlan doesn't get as much fun out of toys or technology so we spend time doing other things he loves. He can't get enough snuggling. He loves bouncing and physical play. He likes to play rough just like a normal little boy and loves being thrown in the air (though he's getting heavy these days so the squatting and throwing is keeping us fit!). He loves to dance around in our arms, listen to us sing, and listen to music (especially Disney and holiday music!). He laughs when something scares him or he gets tickled (and he's pretty ticklish!). He squints a lot in the sun but loves the wind and it makes him squeal in happiness to be outside. He thinks it's funny when Raina (our dog) licks his feet but thinks it's too much when she licks his face. He lets us know when he wants his kitty soother or to be held by making a protest sound. He loves to stand on people. He gets very excited to be in the bathtub and thinks water play is so much fun! He thinks the grass is tickly. He loves being naked and diaper change time is hilarious! He loves the smell of lavender. He loves really loud rattles and songs with percussion or bass. We love how recognizes people he spends a lot of time with and smiles at their voices but also isn't bothered by strangers. This is a crazy crazy journey we are all on and it can be very isolating so sharing is a great way to touch base and feel that community and support we know is out there. We love and appreciate the support and we love all of Team Lachlan's community. We may not know when he will see, sit, walk or talk but defying odds is going to be what he does best and are glad to have you along the way ❤️
A lot of people have asked how they can help and so we are setting up this fund to allow people to contribute to helping Lachlan. We work very hard to provide what he needs and there are amazing funding options available but they don’t cover everything and there are many expenses. Some of the things we are saving for are: special pediatric wheelchair, a special sitting chair for floor play, accessibility adaptions for our car and home, more extensive genetic testing, occupational therapy, and physical therapy.
Lachlan’s Story: Many of you may be wondering what exactly is Lachlan's story and the truth is we don't really have answers yet so we don't know either but I'd like to share what we do know. Lachlan is exceptionally rare and is undiagnosed. He was monitored very closely throughout pregnancy due to a previous loss we had and everything was textbook perfect. Labour was a long 4 days with him not facing the right way but once he decided it was time it went pretty quick and very smooth and he was born naturally via waterbirth at KGH January 22, 2017. He was healthy and hungry and adorable and we took him home later that day happy as can be though with no idea what we were doing as most new parents are.
At 1 month old there were some concerns with his head growth so we took him to the hospital and had an X-ray done, his head was small and they wanted follow up appointments. We did blood work and tested for all kinds of things and he even had an MRI done. He’s had multiple EEGs, X-rays, bloodwork, exams, and more and more tests. He was cleared for all infectious diseases or known things that could be causing his slow brain growth. The next step was genetics testing for rare diseases or mutations. He's had 3-4 genetics tests and DNA testing done without a conclusive diagnosis and each test takes months to get results from. We are being referred to another genetics test we can do in the States to see if we can confirm a gene or find out something new. Gene discovery is fairly new in the medical world and new genes are being discovered all the time. What we are looking at is he could be the only discovery or there may be only one other recorded case in the world so he is definitely an incredibly rare soul. We are on our own journey and we will make our own path through.
What we do know is that nothing is a given for him and every one of his achievements are something huge to celebrate as they are true miracles. He has been climbing an uphill battle since he was just a few months old with seizures that make it very hard to learn. He has seizure spasms as well as constant underlying seizure acitivity. He is on his fourth med for this and they have improved significantly but are still not under control. Imagine trying to learn a new language or sport and blacking out many times while you try to figure that out. He doesn't give up though and neither will we! Due to this huge challenge and his smaller brain (which means it is more challenging to make connections as he learns), he has other global development delays. His development stayed on track until about 3 months old but has progressed slowly since then. He is working on outgrowing his newborn reflexes still and he has spasticity which causes him to go rigid when he tries to learn to move his body making things like learning how to kick, reach, bend, roll, sit up, and grab things very hard. He is now opening his hands and working on learning how to grasp things and hold on. A lot of it is accidental but that's how babies learn He can sit up for a few seconds before he loses balance and if you start him rolling he finishes it easily on his own. His head control has improved so much and he's working on finding his balance and middle by moving forward and back and doing little baby crunches. Another one of his big challenges is he has cortical vision impairment which causes near blindness. That means that his eyes are perfect but his brain doesn't know what he sees yet. Sort of like how a newborn can't tell what they are seeing yet. He has just started to show that he sees some things now and does track on occasion. That's exciting because not being able to see really challenges his development as well since it's much harder to find your balance, figure out what's up and down, and learn how to speak or eat. Most babies learn to eat by watching their parents intensely. Since Lachlan doesn't have that ability he has oral challenges and is at high risk for aspiration. He's done a swallow study fluoroscopy which is a moving X-ray to see and he does aspirate some of his milk and food. Aspiration can lead to pneumonia and infection and is very dangerous. This has gotten more challenging for him as his airways grow. He ended up with an NG tube and then in the summer of 2018 he had surgery to get a G-tube. He is now entirely tube fed directly into his stomach which is much safer and easier for him and us as well. We are just now getting back into physical therapy and occupational therapy since his recovery from the surgery.
Lachlan is followed very closely by a very large team of doctors and therapists and has so many people in his corner. We are so grateful for all of their help. We have a family doctor, specialist pediatrician, genetic counselor, neurologist, occupational therapist, speech therapist, dietitian, infant development worker, pediatric ophthalmologist, social worker, vision therapist, three physical therapists (one of which is specialized in nervous system work and is in Toronto). Lachlan has 1-3 therapy appointments a week and usually at least 1 doctor appointment a week. We track all of his food intake, his number and type of diapers, his sleep, the number of seizures he has (what we can notice), and when we give him meds. While he’s sleeping we record him to see if he’s being woken up by seizures. We do all this to make sure he is safe, help get more answers, and because the doctors will ask about him and we would never remember if we didn’t record it all! :) We do have help as we have a childcare provider and grandparents in the area as well as flexible schedules for our jobs.
To say this is scary and challenging is an understatement. Nothing could have prepared us for this and we are strong because we have to be, not because we were at all ready for this. We are so incredibly grateful that he is easy going and that we get to see him smile and laugh so we know he is happy. He's such an amazing blessing and fills our lives with light. He has already taught us so much and most of all that life is not guaranteed and is short and unpredictable so we need to make the most of it and truly love what we do and spend time with our loved ones. There is no time to waste on negativity! Lachlan doesn't get as much fun out of toys or technology so we spend time doing other things he loves. He can't get enough snuggling. He loves bouncing and physical play. He likes to play rough just like a normal little boy and loves being thrown in the air (though he's getting heavy these days so the squatting and throwing is keeping us fit!). He loves to dance around in our arms, listen to us sing, and listen to music (especially Disney and holiday music!). He laughs when something scares him or he gets tickled (and he's pretty ticklish!). He squints a lot in the sun but loves the wind and it makes him squeal in happiness to be outside. He thinks it's funny when Raina (our dog) licks his feet but thinks it's too much when she licks his face. He lets us know when he wants his kitty soother or to be held by making a protest sound. He loves to stand on people. He gets very excited to be in the bathtub and thinks water play is so much fun! He thinks the grass is tickly. He loves being naked and diaper change time is hilarious! He loves the smell of lavender. He loves really loud rattles and songs with percussion or bass. We love how recognizes people he spends a lot of time with and smiles at their voices but also isn't bothered by strangers. This is a crazy crazy journey we are all on and it can be very isolating so sharing is a great way to touch base and feel that community and support we know is out there. We love and appreciate the support and we love all of Team Lachlan's community. We may not know when he will see, sit, walk or talk but defying odds is going to be what he does best and are glad to have you along the way ❤️
